Debbie leads me through
her San Francisco apartment with the careful grace of one who must always
conserve energy. She is slender, perhaps a little too slender, her red
sweater and black hair framing a pale face and delicate, worn smile. She
is also a victim of an illness so elusive that those who contract it suffer
not only from chronic pain, but also from public ignorance of its existence.

It goes by many names.
Sick Building Syndrome (SBS) occurs when you feel temporarily sick while
occupying a building contaminated with one or more chemicals or organic
compounds, such as "outgassing" emissions from new carpeting
or floating spores from moldy air ducts, to which you are especially sensitive.
On occasion, the exposure can render a victim chronically ill for years
afterward, which is called Building Related Illness (BRI).

Both belong to an alphabet
soup of similar disorders, such as Multiple Chemical Sensitivity (MCS),
Toxicant-Induced Loss of Tolerance (TILT), Environmental Illness (EI)
and becoming Chemically Injured (CI).

Victims can suffer
from a broad range of symptoms, such as chronic fatigue, nausea, vision
problems and memory loss. What causes an environmental illness is still
unclear, but it may be that exposure to certain substances can "overload"
some people's immune and detoxification systems to the point that they
no longer work properly.

Both the World Health
Organization and the U.S. Environmental Protection Agency recognize Sick
Building Syndrome and Building Related Illness as a public health problem.
Yet, because an environmental illness is difficult to diagnose, can appear
and disappear seemingly at random, and often results in lost time at work,
many victims are branded hypochondriacs or shirkers by employers, peers,
and even doctors.

A 42-year-old professional
acupuncturist and online community monitor, Debbie settles us into her
neatly kept office -- a converted bedroom -- for our interview. She asks
that her last name not be used because she doesn't want her acupuncture
clients to know about her condition. "Relationships have suffered
because of that," she says, including those with members of her family.
"Basically you live with an illness that most people perceive as
being psychosomatic. There are no tests that can measure this illness,
so nobody believes you."

Two years ago, the
landlord painted the room, so we can only stay in it for a short time,
or her larynx will begin to swell. Yet this is the only place in the city
where she can work without falling seriously ill. "My home is my
safe haven because I've made it that way. For instance, I can only buy
old furniture. People with environmental illness can't be around particle
board. The other day I bought some that was really moldy. I had to get
rid of it."

Every day, Americans
are exposed to hundreds of chemicals, which sometimes combine to form
even more complex and untested compounds. One of the more maddening aspects
of Multiple Chemical Sensitivity is that even if only a single substance
-- formaldehyde, for example -- made you sick in the first place, as the
illness progresses you become sensitive to a wider range of chemicals.
So anything, from a stick of furniture to an aerosol spray can, might
provoke an unexpected allergic reaction.

Not unlike a wheelchair-bound
paraplegic, Debbie's disability is also one of mobility. She can visit
most offices and homes only briefly, and travel is nearly impossible.
"I react on planes and trains if they use any kind of disinfectant,"
she says. "I'm very, very fortunate that I have a job where I only
have to go in for meetings once a week and we meet outdoors. But there
are occasions where I've had to go into the office for a couple of hours,
and it usually means I'm sick for days."

Anthony Bernheim, a
prominent San Francisco architect who supports green design principles,
partly blames the careless use of recycled materials in product manufacturing.
"For example, where recycled paper is used, there is the potential
to introduce formaldehyde emissions. More care needs to be exercised before
resource-efficient materials are used just because of their recycled content."

Exposure to formaldehyde
gas, used as a paper coating and pressed-wood adhesive (as well as in
many other common products) can result in severe allergic reactions or
even cancer among environmentally sensitive individuals.

Debbie never learned
which combination of chemicals first laid her low, but she does know where
and when. Her troubles began in the spring of 1998, at a temporary job
assignment in one of San Francisco's newer highrises. "I was working
in an office that had been recently painted, (had) new carpeting, and
all the cubicles and furniture were new. You could not open the windows.
The circulation in that particular area was very poor, and other people
were complaining of not feeling well.

"I started to
have some very weird symptoms that I'd never experienced before: headaches,
my eyes were burning, and my mouth was burning. I'm in the health industry,
so I started to suspect something like Sick Building Syndrome was going
on. But the assignment was ending and I had no idea at the time that my
staying there would have permanent results to my health. I thought, 'OK,
I'll be better once I leave here.'"

As would most of us.
Just getting through the day involves dodging so many visible dangers
that we rarely have time to worry about the invisible ones. "The
majority of the people with Sick Building Syndrome aren't going to the
doctor," according to Dr. Rajiv Bhatia, director of occupational
and environmental health for San Francisco's Department of Public Health.

Yet Debbie did visit
a doctor, after her symptoms persisted for weeks no matter where she worked,
in an unsuccessful attempt to receive Worker's Compensation. "As
is typical of people with this illness, there are no tests to measure
any kind of injury to your immune system or to your liver, so he wrote
a very long report implying that this was all in my head," she says.

Bernheim, the architect,
says experts are lagging in linking environmental toxics to illness: "The
medical profession has been slow to make the connection between the symptoms
and Sick Building Syndrome in the short term, and Building Related Illness
over the long term," he says. "With BRI, it is particularly
difficult to make the connections between cause and effect, since BRIs
may take some years to develop in the body."

"The problem is
the vagueness of the term," says Bhatia, referring to Sick Building
Syndrome. Without solid evidence, a smoking gun that points to a specific
building or substance as the cause, physicians find it a challenge to
relate a patient's symptoms to an environmental illness.

For years, victims
of chronic illnesses, especially women, have complained of having to put
up with busy doctors who have no time for mysteries. Often these patients
are accused of faking symptoms, since there are no open wounds to show.

Fortunately, after
several more tries, Debbie found a sympathetic physician. "She ran
a lot of tests and basically nothing showed up. But based on my symptoms,
she realized that I was unable to work so I was able to go on short-term
disability for a year." Now totally self-supporting, "I try
to remain a positive person," says Debbie. "But there are times
when it can be overwhelming, because you basically become a prisoner in
your own home."

Environmental illness
victims have a much less-developed support network than people with more
well-known ailments, such as HIV or cancer. Debbie tried without success
to start a support group in San Francisco. Groups do exist in Alameda,
Sonoma and Mendocino counties. Debbie also contributes to an international
mailing list operated by and for sufferers. "Occasionally I'll go
on there and talk to people," she says. "But I've never met
anybody else in person who is as sick as I am."

Still, she remains
hopeful for the future, and credits Chinese herbs and acupuncture with
helping her to remain functional. "I think that as more and more
people put two and two together, that they have these chronic, unexplained
illnesses, and the doctors start becoming more aware and more accepting,
things will start to change," she says. "But we're really far
away from that happening."

The interview has ended.
I turn off the tape recorder, put on my coat, say my farewell, and head
for the door. Suddenly Debbie stands up, rushes toward me and confesses,
almost apologetically, that sometimes she wishes that she suffered from
cancer instead.

Then, at least, people
might believe her.

Tips
For Keeping Your Home Healthy My wife is the Spider Woman. She grows spider plants all through
our home, where they hang ominously over the tops of bookshelves, swing
silky tendrils from the bathroom ceiling, and breed in water-filled canisters
crowding the kitchen sink. I keep expecting them to break loose from their
roots and feed on me in my sleep.

No, this isn't a rain
forest fetish, just a modest attempt to keep the air fresh and our allergies
at bay. Certain plants, such as spider, philodendron and peace lily, actually
absorb invisible toxic gases emitted by common home and office products,
according to "How to Grow Fresh Air: Fifty Houseplants That Purify
Your Home or Office" (1997, Penguin Books), by NASA plant researcher
B.C. Wolverton.

My wife's interest
in plants is indicative of a growing concern over the quality of indoor
air in our homes and workplaces. Such organizations as the Environmental
Protection Agency, the National Safety Council and the World Health Organization
warn that many of the manufactured goods that we use every day -- the
wooden furniture that we sit on, the paint that we decorate with, the
plastics that we use for just about everything -- commonly produce toxic
fumes, a process called outgassing. The smell of new paint, for instance,
is an extreme example.

People who develop
an acute sensitivity to one or more of these toxic "outgasses"
can contract an "environmental illness," such as Sick Building
Syndrome, with symptoms that range from chronic fatigue and nausea to
vision problems and memory loss. Even people without an acute sensitivity
can suffer from milder symptoms, such as a vague feeling of tiredness
or lack of energy while indoors. So no matter what your state of health,
you can improve your overall sense of well-being by improving the quality
of the indoor air that you breathe. Here is a good way to start.

Step One: Get some fresh air into the building if possible. Outgasses are much
less of a problem if indoor air is constantly being replaced with cleaner
air from the outside. Also, a poorly ventilated room that's full of people
will lower the oxygen and build up the carbon dioxide levels. So throw
open your windows once every day or two, even on a hot or cold day.

There are places, of
course, where you can't open the windows, or where the outdoor air quality
is also suspect. High Efficiency Particulate Air (HEPA) technology air
cleaners can freshen stale rooms in your home or workplace by filtering
out tiny particles that you would otherwise breathe. The local hardware
store or pharmacy will probably carry some inexpensive models. You can
also invest in higher-end equipment from such companies as Colorado-based
Absolute Air Cleaners and Allergy Products which, according to Vice President
Barry Cohen, are more efficient and require fewer replacement filters.

Cohen has a very personal
reason for getting into the clean air business, having been "chemically
poisoned" while working as a contractor who treated swimming pool
decks with epoxy resins and acrylics.

"I was too stupid
at the time to know how dangerous it was. It hurt my immune system badly,
I was sick for years, and I almost died." Now he markets environmentally
friendly products to chemically sensitive individuals, as well as businesses,
the military and even the White House.

Step Two: Look around the building for possible sources of contamination, such
as particle board furniture (which contain formaldehyde), cleaning products
(which can contain volatile organic compounds), and old books (which may
be moldy). This net casts pretty wide, with a typical house or apartment
containing hundreds of chemicals and organic compounds. Since most of
us lack advanced degrees in industrial chemistry, the trick is figuring
out which, if any, of these substances may be significantly bad for your
health.

San Francisco architect
Anthony Bernheim, a prominent proponent of green design principles, suggests
a surprisingly simple method: "Odor is a first indication of the
presence of irritants in the air. So when choosing materials, smell samples
of the products first." If it makes you feel ill or queasy, bingo.

Clip this paragraph
and nail it to your forehead. Occupying a space that has been recently
painted or carpeted, or filled with new furniture, is a major cause of
Sick Building Syndrome. When new, these products will outgas at high levels
for weeks, months or even years after installation, until the chemicals
have had a chance to settle down. So whenever possible, insist that the
space is aired out thoroughly before you reoccupy it.

Step Three: Once you identify an offending product, try to replace it with a
healthier alternative. Unfinished furniture made from solid wood, for
instance, outgasses much less than either particle board or treated wood.
Also, consumers are starting to ditch chemical-laden commercial household
cleansers in favor of more environmentally friendly versions. For instance,
we use Life Tree HomeSoap, a phosphate-free all-purpose cleanser made
from vegetable and citrus oils.

If replacing or disposing
of an item is not an option, you can try keeping it in an airtight container.
Valuable old books, for instance, can go behind glass shelving or into
plastic bags to slow mold growth. If you want to do further research on
a specific product or chemical and how to protect yourself from its effects,
the MCS-CI-Exile discussion forum is a good place to ask questions of
people with similar experiences.

Step Four: Keep your carpeting in good condition. Left alone, it can create
a zoo of toxic particles, such as dust mites, mold and bacteria. Some
particles are so tiny that a standard vacuum cleaner filter may be too
porous to pick them up, thus allowing them to blow back into the air.
You can solve this with a vacuum cleaner that includes a HEPA filter.
Originally designed by the Atomic Energy Commission to remove radioactive
materials from industrial air ducts, it can filter out particles as small
as .03 microns.

According to Mike Boyle,
the assistant manager at Vacuum World in El Cerrito, Calif., HEPA vacuum
cleaners are very popular among customers with special needs. "People
who have allergies and asthma can really tell the difference." He
adds that they don't necessarily cost more than a non-HEPA vacuum cleaners,
depending upon which model you choose.

Not everybody is willing
to vacuum the entire house every few days, and some of us find even the
cleanest carpets too much of a dust magnet. If you own your own home,
one solution is to rip out the rugs and install hardwood or tile floors.
If you rent, consider looking for an older apartment without carpeting.

Step Five: Keep your body healthy, thus better able to handle whatever toxins
it does encounter. "I believe the illness [Sick Building Syndrome
or Building Related Illness] is caused by many things coming to a head
at once, among them a breakdown in the immune and liver detoxification
systems, so strengthening these two systems should prove beneficial,"
says Debbie, a professional acupuncturist who suffers from Building Related
Illness who did not want to use her full name (interviewed in our last
column).

To that end, she takes
a multivitamin anti-oxidant formula with milk thistle to improve her liver,
and a Chinese herbal formula that contains Astragalus Huang Qi for her
immune system. Of course, every body has different needs, so consider
contacting a qualified nutritionist to develop your own plan. At the very
least, eat healthy, get some exercise, and spend some time outdoors.

Regardless of whether
you are chemically sensitive or just interested in staying fit, clean
indoor air remains important to your health. Don't limit your concerns
to the home; armed with the right information, you might convince your
employer to take a closer look at workplace conditions as well. So spend
some time playing private detective, investigating your immediate environment,
examining odd pieces of evidence, and letting the culprits dissolve into
the fresh air of day.

Sufferers Start To
Raise Voices, Take Action
You may not realize it, but the buildings that we live and work in have
the capacity to make people sick. A few agencies, such as the World
Health Organization and the U.S.
Environmental Protection Agency, have attempted to educate the public
about the dangers of poor indoor air quality. But Sick Building Syndrome
and related illnesses receive far less attention than smoking, auto exhaust
and other more well-known forms of air pollution.

What is new is that
the people who get sick are also starting to get mad. Slowly, sometimes
haltingly, they are also starting to organize. "If landlords maintained
their buildings safely, we would not be getting increasing requests for
help in seeking accommodations for the chemically sensitive," says
Barbara Wilkie, current president of the Environmental Health Network,
an alliance of environmental illness sufferers.

The effects of toxic
exposure from airborne contaminants are difficult to diagnose, especially
when the specific agent is hidden behind a wall or in an air duct. Sick-building
victims are often unaware of why they feel ill, only that they do. "I
think most people don't even realize that, for example, new carpet is
poisonous," says San Francisco affordable housing activist Todd Edelman.
New carpeting can emit toxic fumes (a process called outgassing) from
the hundreds of chemicals and volatile organic compounds (VOCs) that are
used to manufacture its fibers, backing and adhesives.

But as public awareness
increases, victims have begun to find one another and organize for mutual
support and, at times, activism. Most notably, over the past few years
building occupants have banded together to launch campaigns against landlords
for failing to control runaway growth of toxic indoor mold, such as by
the residents of several apartment complexes in Hunters Point.

Likewise, in November
1999 residents sued the landlord and employees of their Los Angeles-area
apartment complex, claiming that mold growth caused by inadequate waterproofing
caused personal injury and property damage. In Sacramento, three bills
were introduced recently to improve mold-related building standards.

While many victims
of sick building illnesses are otherwise ordinary citizens caught up in
an unhealthy housing situation, others are chronically sensitive to chemicals
and organic compounds that are commonly found in modern buildings, such
as formaldehyde. Many of these sufferers express a simmering rage against
negligent landlords, physicians with little training in environmental
illnesses, and the government for dragging its heels in granting disability
payments or establishing building codes that improve indoor air quality.

"Society's reactions
create and reinforce the isolation that we live in," says Melissa
Kaplan, director of The Carousel Network, a patient support group in Sonoma
County, Calif., that publishes a newsletter and holds monthly meetings
for people concerned about environmental and related illnesses. "Telling
someone that 'it doesn't smell very much' or 'we didn't use very much'
is like telling someone in a wheelchair that 'there's only a couple of
steps.'"

"We have many
of the same problems that AIDS patients have -- except we are HIV negative,"
says Barbara Herskovitz, who moderates a patient support group in Florida
and who contracted a chronic disability from a contaminated courthouse
in that state. "Our immune systems are trashed, we are chronically
fatigued, have brain fog, some of us were treated repeatedly with antibiotics
for 'bronchitis' when we didn't have bronchitis."

Few support groups
exist at the local level, partly because many patients are unable to travel
or visit unfamiliar buildings without risking a relapse. Many local communities,
even within the supposedly progressive San Francisco Bay Area, have none
at all. So a popular alternative is the virtual meeting ground of the
Internet. A recent digest of the Sick Buildings mailing list, for instance,
included a discussion on mold mitigation requirements in school buildings
and an update on contaminated-building lawsuits.

Likewise, the Environmental
Health Network provides a Web-based information portal. "Our numbers
grow," says Wilkie, who stresses that she is speaking as an individual,
and not in her capacity as an EHN president. "They don't grow because
people think this is a really fun illness to have. Our numbers grow because
we haven't been given the time of day by mainstream medical industry,
various government agencies and, in the past, mainstream media."

To see if a nosy columnist
might get "the time of day," I contacted some of the bureaucrats
who run the city of San Francisco. First off, it took two weeks for a
spokesperson from the Department of Building Inspection to return my call,
only to say that DBI was "not qualified" to comment on the subject
of sick buildings, suggesting instead that a call to the Department of
Public Health might prove more fruitful.

"We have not spent
much time on (Sick Building Syndrome) and have not identified it as a
major problem," says Dr. Rajiv Bhatia, DPH's director of occupational
and environmental health. "If it's done legally and up to code, I
wouldn't expect remodeling to be a problem." While I very much appreciate
Bhatia's open and straightforward comments, it does seem rather odd that
DPH would comment on building codes, while DBI would not.

Still, some of the
folks at City Hall are beginning to see the light. In 1999, San Francisco
adopted the Resource-Efficient City Building Ordinances which, among other
things, require that new buildings owned or leased by the city demonstrate
adequate indoor environmental quality and minimize the use of toxic materials.
Current projects coordinated by the Department of the Environment include
Laguna Honda Hospital, the new California Academy of Sciences Museum,
and a new city office tower at 525 Golden Gate Ave.

Despite an upbeat attitude
toward the projects, Mark Westlund, the department's public information
officer, agrees that indoor air quality is not an overall priority for
city government. He says, however, that city officials are starting to
pay more attention to the issue. "Once we start building a half-billion-dollar
hospital, awareness becomes really focused," he says.

But there are others
within the building industry itself who are addressing the issue. Real
Lapalme, the owner of Berkeley, Calif.-based Green Man Builders, specializes
in environmentally friendly home and furniture construction. After exposure
to copper arsenate wood preservative caused his health to deteriorate,
Lapalme began promoting green building principles through demonstration
projects and university lectures.

His efforts have been
met with mixed success. He initially found support among clients and colleagues
in Marin County, Calif., where environmentalism is popular. "When
I moved to Humboldt County, my efforts to educate the market about green
building got me tagged as a tree hugger, with a negative impact on my
business," he says. "Back in the Bay Area now, I am more aware
of the political slant that people tend to put on questions of air quality,
and I try to avoid pushing people in directions that they are not ready
to go."

For individuals suffering
from an environmental illness, maintaining good health requires more than
dieting, exercise and laying off the cancer sticks. Sometimes it also
requires a political diet. HIV, breast cancer, hepatitis, sickle cell
anemia -- consider the long and courageous list of individual patients
who banded together to form a community that demands better information
and treatment from mainstream society.

People who suffer from
sick buildings -- or for that matter, from manufactured chemicals and
air pollution in general -- are just beginning to understand that there
is indeed a method to their maladies, that they are neither hypochondriacs
nor alone in their suffering. "For the most part, we are fractured
into umpteen dozen splinter groups," says Herskovitz.

Right now political
action is embryonic, a lawsuit here, a letter-writing campaign there.
Like all good fights, it is slow, difficult and often discouraging for
its foot soldiers. "Until people -- including building managers,
employers and the architects and designers who cause sick building and
sick spaces to be built -- understand that this is a very real, very disabling
disease, there will be no change," says Kaplan.

Lapalme agrees. "For
the industry to willingly change their way of work, they need to see for
themselves the benefits involved. There is a tendency to perceive environmentalism
as an imposition of the wealthy on honest working folk. An educative approach
would do well to precede a legislative one, so as to allow the trades
to initiate changes themselves."

But that is how political
activism always starts, with education, understanding and perseverance.
And ultimately, the good fight is also a necessary fight. As necessary,
perhaps, as breathing.

David Bragi, a freelance
journalist who lives in El Cerrito, California, is Editor of the multicultural
webzine New Tribal Dawn. Sick Building Syndrome: Victims Of Mysterious
Illness Suffer From Public Ignorance. Originally published online by SF
Gate.